This mess of headlines and claims was generated in response to one autism prevalence study, Baird et al. (2006), published in the Lancet.

All 56,946 individuals comprising the targeted population cohort in this study are, as of today, the last day in the decade, 18 years of age or older. They were born between July 1, 1990 and Dec 31, 1991 and they are now all adults.

Within this cohort, Baird et al. (2006) reported an autistic spectrum prevalence of ~116/10,000. That's 1 in 86, and all these autistics, originally assessed as such when 9 to 14yrs old, are now adults.

For those to whom this is a matter of pressing importance, Asperger's contributed exactly nothing to that prevalence figure. So none of those 1 in 86 assessed-as-autistic now-adults are, at least according to Baird et al. (2006), Asperger's.

I've previously rattledon about Baird et al. (2006), one of the most important autism epidemiological studies to be published to date, and one of the most misrepresented. The authors found that small differences in case definition produced prevalence figures ranging from ~25/10,000 (1 in 400) to ~116/10,000 (1 in 86), a 4.6-fold discrepancy--within the same cohort at the same time, using the same diagnostic criteria, diagnostic team, and "gold standard" diagnostic instruments.

But such provocative and crucial findings, and others similar, were lost in the predictably incoherent uproar (see representative headlines and quotes, above) over that one figure--the 1 in 86 who as of today are all adults. I suggest that if Baird et al. (2006) had been conducted in exactly the same manner with a cohort born five years earlier, the findings would not be much different. Or ten years earlier, or more, were that possible. Of course that's a wild guess, but not an entirely unfounded one.

Earlier this year, a small innovative UK study reported a prevalence of about 1 in 100 for autistics aged 16 and up--for autistic adults right up to and over age 75. There are only bad reasons for why this small study of autistic adults is unique and unprecedented.

The world would look very different now, for both autistics and nonautistics, if over the past decade or more there had been a rational discourse about autism prevalence in which the existence of older autistics was not automatically denied.

[133] This said, there is no doubt for the Tribunal that autistic people are persons, that unfortunately they are not well accepted in society, that they are looked at often times as special creatures who are not part of society as a whole and that society would be better off without them. The Tribunal is further of the view that autistic people need to be better respected and protected in society. They need above all to be better understood and accepted. [...]

[134] Hence, the Tribunal is of the view that the Canadian Human Rights Act provides to autistic people the same protection as to non autistic people and that both are equal before and under the law.

These statements are contrary to existing Canadian jurisprudence. In ABA-related litigation, autism advocates have used Canada's major human rights laws, including our highest law, the Charter of Rights and Freedoms, to deny the humanity, personhood, equality and human rights of most autistics in Canada.

This wholesale denial and dehumanization is exemplified in the Auton and Wynberg trial decisions. These two decisions have been universally revered and promoted by autism advocates, as representing what autistics deserve.

By "most autistics," I mean those of us, the majority of autistics in Canada, who have not received unlimited ABA-based interventions starting early in life.

To my knowledge, the CHRT decision in my case is unprecedented in Canada, in recognizing the personhood, humanity, equality, and human rights of autistics--regardless of which interventions we have or have not received at any point in our lives. More about the CHRT decision, including its serious problems, can be found here, and some background is here.

The CHRT decision was not appealed by Canada Post. It has also been cited in another case, this time decided in Federal Court, involving an autistic and Canada Post. Here is an example of how my case was cited, from paragraph 79:

The Dawson case above, specifically is critical of rigid corporate rules that preclude true inclusiveness of those with disabilities such as the applicants.

The decision in my case was helpful in giving another autistic person the chance to pursue, if she wishes, a human rights case based on Canada Post's decision not to hire her. And the Federal Court decision in turn includes language which may further help other autistics seeking to be regarded and treated as human beings with human rights.

Thursday, July 23, 2009

Promotion first, science later, if ever. This pattern is near universal when it comes to autism interventions. In the absence of good quality research, autism interventions are loudly claimed to be effective.

For those promoting ABA-based autism interventions, claims of effectiveness unfounded in good quality research were only the first step. The real triumph has been widespread agreement that fair tests of ABA-based interventions are unethical and bad for autistics. As a result, any experimental design carrying the risk of being informative about the benefits and harms of ABA-based interventions has, for a long time now, been considered unethical.

The practice of claiming effectiveness for an autism intervention which has not been fairly tested, then using these claims of effectiveness to deem fair tests unethical, has clear benefits to service providers. And this practice has received wall-to-wall support from autism advocates, who have in turn imposed it on autistics through lobbying and litigation.

Meanwhile, this practice is not admired outside the realm of autism advocacy. Premature claims of effectiveness in themselves make fair tests of interventions more difficult--particularly, as is the case with many autism interventions, when blinding cannot be fully achieved. But those promoting ABA-based autism interventions go further and demand that autistics be entirely denied the benefit and protection of good experimental design.

In my view, this practice--its longstanding and widespread support by autism advocates, its more recent support by ASAN (example here), and its widespread imposition on autistics--continues to greatly harm autistics. Any group so denied such basic standards of science and ethics would be harmed.

Interestingly, not all autism researchers have stooped to prevailing autism advocacy standards.

Some years ago, a pilot RCT of an early autism intervention was published (Aldred et al., 2004). The intervention was manualized, of relatively low intensity, and targeted solely at the parents of preschool autistic children. Through a true experimental design, the intervention was found to have several significant positive effects, most markedly in increasing the expressive language of very young autistic children.

Successful RCTs of early autism interventions are virtually non-existent. But the researchers involved in Aldred et al. (2004) totally failed to go forth and proclaim the effectiveness of their manualized intervention. After all, they only had a small pilot RCT--the same size as the only published RCT, not a notably successful one (Smith et al., 2000, 2001), in the entire 48-year history of research into ABA-based autism interventions.

Some information about the PACT's design has been reported in a recent paper (Aldred & Green, 2009).

The trial began in early 2006 and will finish late this year. The researchers hoped to recruit 144 preschool autistic children across three sites, but exceeded their expectations and recruited 152. These children were randomized into two arms, one receiving the PACT intervention, while children in both arms continued to receive whatever other interventions their parents chose ("treatment as usual").

So far as I know, the PACT is larger than any existing published RCT in the history of autism research. The PACT's design means that it carries a good risk of being informative about the effectiveness of the studied intervention. There is no good reason for the PACT to be unprecedented, but it is.

In one of the PACT's recent newsletters, the PACT's Chief Investigator, Jonathan Green, notes that there has been a lot of interest in the PACT manual and in "training opportunities" with respect to this intervention. Dr Green responds:

Until we have the results of the trial we are not able to disseminate the intervention manual or to undertake any training; but be assured that after the results are in (and depending of course on the outcome in terms of effectiveness!) we do have potential plans in place for such dissemination.

In other words, and keeping in mind there is a successful published pilot RCT, there are no plans to disseminate information about the intervention--not until there is good quality evidence as to its effectiveness. This is the recognized scientific standard in non-autism areas.

Aldred et al. (2004) and the PACT shouldn't in any way be above scrutiny or criticism. For example, I can see problems in how Aldred et al. (2004) was designed (I mention one of them here), which may or may not be carried over to the PACT. But the pilot RCT and the resulting PACT generally demonstrate the only science- and ethics-based sequence when it comes to interventions and treatments: good quality research first, then think about spreading the word.

Turing’s paper is rich and multi-faceted and we are not seeking to overturn all of the extant interpretations. We do wish to suggest that a potent and indeed subversive perspective in the paper has been underemphasized. Some of the message of Turing’s paper is encouraging us to take a broader perspective on intelligence and some of his points are ethical in nature. Turing’s paper is about the possibility of unusual forms of intelligence, our inability to recognize those intelligences, and the limitations of indistinguishability as a standard for defining intelligence. “Inability to imitate does not rule out intelligence” is an alternative way of reading many parts of his argument. Turing was issuing the warning that we should not dismiss or persecute entities which we cannot easily categorize or understand.

The facts of Turing's life enter into our argument, as does autism in many respects. Here is what we conclude:

It is possible that Turing conceived of his imitation test precisely because he had so much difficulty “passing” and communicating himself. In social settings these facts were seen as disabilities but in the longer term they helped Turing produce this brilliant essay.

Tyler Cowen is a professor of economics at George Mason University. His page is here. He blogs at Marginal Revolution; his post about our paper is here.

Monday, July 13, 2009

As an advocate for the rights of physically and mentally disabled people, I am acutely aware of how many people in our society consider the disabled to be childlike, helpless, hopeless, nonfunctioning and noncontributing members of society.

This opens a NYT opinion piece written by Evan Kemp. While Mr Kemp raises concerns about a specific fundraising event, his statements have much broader relevance.

For instance, Mr Kemp writes of the great harm that ensues when disabled children are denied the possibility of learning from successful disabled adults. The autism advocacy signature argument that disabled adults with achievements cannot really be disabled is not directly mentioned. But this is just another way to deny that successful disabled adults exist and it carries the same consequences.

Mr Kemp also notes how portraying disability as "overwhelmingly destructive" results in fear of disabled people and our consequent segregation from society. Then there is the issue of research priorities, some of which have the effect of supporting:

the damaging and common prejudice that handicapped people are "sick." As sick people, it follows that we should allow others to take care of all our needs until a cure is found.

Throughout his piece, Mr Kemp emphasizes that regarding disabled people as frightening and pathetic infantilizes us and leads us towards segregation, hopelessness, and dependence, to the great detriment of ourselves and others. Mr Kemp concludes with many recommendations, including:

Problems of economic waste, demoralization and segregation can be solved only when disabled people are depicted in the light of our very real accomplishments, capabilities and rights.

Mr Kemp's opinion piece was published almost three decades ago, in 1981. You can find it here. Autism advocacy continues to run in the opposite direction, rejecting and rolling back what we have learned about disability and human rights, going backwards in time to before Mr Kemp ever said a word.

Monday, July 06, 2009

Baron-Cohen et al. (2009) propose a world where there are 157/10,000 autistics. The authors used what they call a "novel approach" to autism epidemiology and this is worth a closer look.

The study is based on questions sent to schools about the UK SEN (Special Education Needs) register, and a survey, including a screening questionaire, sent to parents of students aged 5 to 9 years. Many schools, 66 out of 162, refused to participate. Of schools that agreed, 79 of 96, representing 8824 out of 11,635 children, provided SEN register information. Of the surveys sent to parents, 29%, representing 3373 out of 11,700 children, were responded to.

Participating schools located 83 children identified as autistic spectrum according to the SEN register. Of these, 10 children were assigned the specific diagnosis of autism (I'll call them "specific-autism"), while the rest were assigned other autistic spectrum diagnoses ("other-spectrum"). None of these diagnoses was verified by Baron-Cohen et al. (2009) in any way. These 83 SEN children constitute 94/10,000 of the proposed 157/10,000.

In the survey, parents were asked whether their child had an existing autistic spectrum diagnosis. The authors "confirmed," to their standards, through information from parents only, diagnoses for 19 children. Four others attended special schools and were assumed to be "confirmed" as autistic without any verification, for a total of 23. No information about how many of these children are specific-autism or other-spectrum is given. The 23 children were expanded into a prevalence of 99/10,000--impressively close to the SEN register figure.

The screening questionaire sent to parents was the recently re-named CAST (Childhood Autism Spectrum Test). All children reported by parents as scoring above one CAST threshold, and a minority of children scoring above a lower CAST threshold, and who were not already reported by the parent survey to be autistic, were invited for assessment. Eventually 77 children underwent assessment by ADOS, ADI-R, and clinical judgment. Eleven children were given autistic spectrum diagnoses--four specific-autism, seven other-spectrum.

So there are three sets of autistic children here: 83 SEN children, 23 diagnosis survey children, and 11 CAST children. The CAST children are considered to represent "unknown" or "undetected" autistics in schools, while the other two sets of children (SEN and diagnosis) represent equivalent samples of "known" autistics who have been located in two different ways from very nearly the same cohort.

Working from the diagnosis and CAST samples, Baron-Cohen et al. (2009) come up with a ratio of total number of cases (known plus unknown) to known cases, which yields a multiplier of 1.67. This in turn is applied to the SEN-based prevalence of 94/10,000, resulting in that grand total of 157/10,000.

The authors report no means of verifying whether the SEN and diagnosis samples are equivalent, an assumption on which the study depends. There is a dearth of demographic information, including the absence of any reported demographic measure common to both the SEN and diagnosis samples.

And for neither "known" sample (SEN and diagnosis) were any of the diagnoses verified either through direct assessment or direct access to records. Other recently reported UK epidemiology has not arrived at such a tidy agreement between prevalence of existing autism diagnoses and prevalence of autistics on the SEN register, nor at such a high prevalence using information from one or both sources.

Before they started sending out surveys, Baird et al. (2006) found that about 15% of 255 autistics with a "known" autism diagnosis (according to various health and clinical records) were not on the SEN register--under any diagnosis at all. This percentage would likely be higher if SEN autistic spectrum diagnoses only were considered.

Whether the 255 "known," pre-survey diagnoses from Baird et al. (2006) would be considered "confirmed" according to the standards of Baron-Cohen et al. (2009) is unclear to me, but in Baird et al. (2006), they add up to a prevalence of ~45/10,000. This is less than half the prevalence of what should be the comparable "known" diagnosis sample in Baron-Cohen et al. (2009).

Then there is Williams et al. (2008), where the authors had access to both medical and SEN records for an entire 14,062-child cohort. Using both kinds of records, they located a total of 86 "known" autistics for a prevalence of ~62/10,000. Of these, 36% were found in medical records only; 17% were found in SEN records only; and 47% were found in both.

Here again the "known" diagnosis total prevalence, derived from direct examination of complete records rather than selective responding to questions directed at schools or parents, is a much lower figure than found via both the SEN and diagnosis samples in Baron-Cohen et al. (2009). And Williams et al. (2008) show that diagnoses appearing in medical records, and diagnoses recorded via SEN, do not produce the same samples of autistic children--at least, not when there is direct access to these records for a complete cohort.

The original contribution of Baron-Cohen et al. (2009) is, according to the authors, the attempt to identify school-aged autistics who haven't been spotted as atypical. This is claimed to set their study apart from Baird et al. (2006). But 8 of the 77 children chosen for direct assessment through CAST screening in Baron-Cohen et al. (2009) were reported to be from "special schools" which, according to the authors, "require extensive assessment of individual special needs." Yet the authors suggest the CAST-screened sample was, in their words,

...quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties.

I don't know whether the CAST-screened special school children (who may or may not have been in the final 11) were on the SEN register, but doesn't this seem likely? Assuming for now (because you can only assume) that this was not under an autism diagnosis, in fact these were exactly the children screened for autism by Baird et al. (2006)--all children on the SEN register for any reason.

Further in this direction, Baron-Cohen et al. (2009) surprisingly report no way for the authors to verify whether the CAST-screened children were or were not on the SEN register, under any diagnosis--including autism. But the study hinges on the two samples, the SEN and CAST samples, being independent from each other.

One more thing to note is the actual composition of the 157/10,000. These numbers come from the reported data. Here goes:

If you add up the figures, you get the 157/10,000 total, of which 34/10,000--well within the range of previous findings--represents prevalence for the specific diagnosis of autism. The authors checked ratios of known to unknown autistic males vs females, and found no difference, showing that female autistics were not more likely than male autistics to be undetected. But the authors didn't check ratios of known to unknown autistics for specific-autism vs other-spectrum diagnoses.

If they did, they would find that for every known specific-autism child, there are about two unknown. The opposite is true for other-spectrum children, where about two are known for every unknown child. While only one-third of all specific-autism children are known, two thirds of other-spectrum children are known. Does this mean that children who meet criteria for the specific diagnosis of autism are much harder to spot, or are doing much better in school, than children who are popularly regarded as having "less severe" autistic spectrum diagnoses?

Or maybe the data are just very difficult to interpret. As usual, if I've made any factual errors, please let me know.

References:

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.

Currently, “severity” of autism most often refers to the attempt to quantify the obviousness of autistic traits and abilities. The more obvious these traits and abilities are judged to be, and therefore the more atypical a person is judged to be, the more “severe” autism is considered to be.

Being “more severe” (having more obvious autistic traits and abilities, or being more obviously atypical) is widely presumed to be worse than being “less severe” (having less obvious autistic traits and abilities or being less obviously atypical), while being not autistic at all (no obvious autistic traits and abilities) is considered an “optimal outcome.”

However, there is no current consensus on what neurocognitive differences underlie observable autistic atypicalities and therefore fundamentally define what makes a person autistic rather than nonautistic. At this fundamental level (what autism is), there is currently no consensual way to judge who is “more autistic” or “less autistic” (which would be construed as “more severely autistic” and “less severely autistic”) or whether this would be good, bad or irrelevant.

Currently there is/are no consensual instrument(s) agreed to measure autism “severity.” The major diagnostic instruments (ADOS, ADI-R) do not work like scales, though they have often and misleadingly been misapplied this way. A recent preliminary attempt to transform the ADOS into a scale of “severity” has just been published (Gotham et al., 2009).

On popular measures of “severity” (the CARS, the ADI-R improperly used as a scale, the SRS), an autistic who has one or more very high apparent abilities (that is, has a highly uneven profile of apparent abilities) will score as more "severe" than an autistic whose apparent abilities are uniformly low.

The large proportion of autistics recently reported to have exceptional skills (Howlin et al., 2009) would be judged as less “severe” if they lost those skills. Exceptional skills are considered to increase “severity” (that is, atypicality) in autism, not decrease it. This would also likely be true of autistic cognitive strengths which have been revealed in the peer-reviewed literature in comparisons between the performance of autistics and nonautistics on a wide range of tasks (I have started compiling an inventory of these, which was the subject of an IMFAR 2009 poster). Indeed, at IMFAR 2009, the loss of exceptional autistic abilities (Eigsti et al., 2009; from Deborah Fein’s group) was reported as evidence for “optimal outcomes” in autism.

In the same direction, we have found that autistics who scored higher on pieces of the ADI-R (and would therefore commonly be assumed to be "more severe") had a wide range of better visual skills than autistics who scored lower on these measures (Caron et al., 2006).

Perhaps unsurprisingly then, autism “severity” (defined and measured in various ways) has been a poor predictor of outcomes in autism (Howlin, 2005). Here are two examples from papers reporting very good outcomes in autism:

It cannot be emphasized strongly enough that… it would have been impossible for anyone to predict this outcome. (Kanner et al., 1972)

… early history explained little of the variance in outcome. Indeed, the good and poor outcome groups differed little with respect to early impairments in social responsiveness, deviant language, and bizarre behaviors. (Szatmari et al.,1989)

Currently the best adult outcomes reported in the literature still belong to autistics who as children met the narrowest, strictest, and presumed-to-be most “severe” autism diagnostic criteria ever devised (Kanner et al., 1972; Szatmari et al., 1989; Farley et al., 2009). Asperger (1944/1991) described an individual whose outcome was outstanding (he was a successful academic) as “grossly autistic” with “impossible behavior,” etc.

Some of the most obvious (that is, most “severe”) and successful autistics have been and continue to be individuals regarded as autistic savants. Indeed, the “obviousness” of these individuals, the fact that their atypicalities are so obvious (which would be judged as so “severe”), has been successfully exploited in the autism literature as a means of investigating the fundamental atypicalities which make autistics autistic.

The assumption that having more obvious autistic traits and abilities is bad (“more severe”) has resulted in prejudicial judgments in the literature. An autistic boy (who has accomplished more as a child and young adult than most people, autistic or otherwise) with a full-scale IQ of more than 100 and a strong performance on numerous tests is judged to be “low-functioning,” because he is so obviously atypical. That is, he is judged to be very “severely” autistic (Bonneh et al., 2008; Belmonte et al., 2009), and this must solely be a very bad thing. In Aldred et al. (2004), preschool autistic children are falsely judged to be “low-functioning” or “high-functioning” solely on the basis of presumed autism “severity” falsely drawn from ADOS scores. It is being falsely and prejudicially assumed that an autistic whose traits and abilities are more obvious must function poorly.

The proposed DSM-V changes will enhance societal prejudices against autistic traits and abilities. These prejudices already serve to prevent autistics whose traits and abilities are more obvious from being considered able to learn, to communicate, to make decisions about our lives, to walk around freely, to be employed, etc. Under the proposed DSM-V changes, autistics who are highly and obviously atypical would be even more harshly judged, without there being anything approaching a sufficient empirical rationale for this. Autistics whose communication and social interaction is highly atypical, or who most strongly pursue their focused abilities and interests (something which has widely been acknowledged leads to good outcomes, but has largely not interested researchers; Howlin, 2005), will now be at risk of being regarded as “most severe.” This is at a time when the term “severe autism” is popularly equated with low expectations, hopelessness, dread and horror.

Also, in my experience, the term “severe autism” is commonly used as a justification for why autistic people not only can but must be treated in ways that would be instantly recognized as unacceptable in any other population. This includes lowering or discarding very basic standards of science and ethics, a pervasive practice now applied to the entire autistic population. I am referring to the basic standards of science and ethics that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

The proposed DSM-V wording raises numerous specific concerns; I will mention two. One is that it enshrines the false and harmful assumption, an assumption showing a striking absence of reciprocity on the part of the DSM-V committee, that if autistics communicate or interact in atypical and possibly very adaptive ways, then this communication or interaction must be defective or wrong, or must not exist at all. Another concern is that by using words such as “rituals,” the DSM-V is perpetuating the misconstrual of autistics’ focused abilities and interests (and motor mannerisms). This misconstrual led to the demonstrably false and harmful assumption that autistics’ atypicalities in this area amount to “obsessions” and must be treatable in the same manner as OCD (see recent failed citalopram RCT, King et al., 2009; a failed fluoxetine RCT has been announced by Neuropharm and Autism Speaks, but not published yet).

In these and other ways the proposed DSM-V autism criteria define possibly very adaptive but atypical autistic traits and abilities as being more “severe” (worse or more defective) the more they are obvious. This leads to the assumption that such traits and abilities should ideally be suppressed and eliminated.

Wednesday, May 27, 2009

There are real and fake smiles that can be distinguished visually, if you know how, and it turns out that there are real and fake laughs. William Hudenko, a clinician and researcher, patiently explained this to me at IMFAR 2009. Real laughs are "voiced" versus fake laughs that are "unvoiced" and these two kinds of laughs can be distinguished acoustically.

Hudenko et al. (in press) describe voiced laughs as having a "tonal, song-like quality" and as "strongly associated with positive affect," while unvoiced laughs are "largely atonal and noisier." Instead of reflecting a person's genuine emotions, unvoiced laughs are hypothesized to reflect various social signals.

When nonautistics laugh, about half the time their laughs are unvoiced. So how do autistics laugh?

Hudenko and his colleagues collected a lot of laughs from autistic children and two groups of nonautistic children (matched on chronological age, and matched according to vocabulary test age equivalents). Laughs were elicited in a 10-minute "laugh assessment sequence" in which "an examiner playfully interacted with each child."

The results? Autistics laughed just as much as nonautistics. The sole difference between autistic and nonautistic laughs was in proportion of voiced laughs. While on average, 97% of autistic children's "laugh episodes" were voiced, only 63% and 47% (age-equivalent and chronological age groups respectively) of nonautistic children's laughs were voiced. And about half the autistic children produced only voiced laughs.

...children with autism routinely produce fewer types of laughs than typically developing children because their laughter is more closely linked to their internal experience of positive affect.

If this is so, then the autistic children in this study expressed more positive emotion--more genuine happy affect--in interacting with another person than did the nonautistic children. Hudenko et al. also refer to an earlier study which found, in the typical population, more positive responses to voiced versus unvoiced laughter. Nonautistics prefer voiced laughter.

Given prevailing standards in the autism literature (arising from prevalent standards of autism advocacy), no one should be surprised at how Hudenko et al. interpret their findings. The authors imply, in the absence of any evidence in this direction, that all this happy, genuine, engaging autistic laughter is unlikely to be socially "appropriate." Unfortunately, according to the authors, autistics "are not using laughter in a socially subtle manner." And here is the paper's unfounded concluding sentence:

In fact, by using laughter in a less social manner it may be that this expressive pattern actually contributes to the social deficits exhibited by children with autism instead of serving to facilitate connections with others.

But the story doesn't quite end there. I ran into Dr Hudenko at IMFAR because he and one of his colleagues had a poster (abstract is here), a follow-up of sorts. In this new and as yet unpublished study, recordings of voiced and unvoiced autistic and nonautistic laughs were played for 135 nonautistic college-aged students. The students were asked to rate their "affective response" to each laugh on a scale from strongly negative to strongly positive. In a different task, the students were asked whether each recorded laugh came from an autistic or nonautistic child.

The results? The students rated their responses to autistic laughs as being significantly more positive than their responses to nonautistic laughs. Interestingly, this held true even when voicing--whether laughs were voiced or unvoiced--was accounted for. And when asked to do so, the nonautistic students could tell autistic and nonautistic laughs apart. The students performed above chance on this task, while only about one-fifth of them believed they could make this distinction.

So Hudenko et al. (in press) contend that autistics' way of laughing is defective and detrimental--a presumed contributor to autistics' presumed social deficits. This in turn implies that ideally, autistics would not have such engagingly positive, genuine and distinctive laughs, and instead should have the only "right" kind of laughter, the kind which characterizes nonautistics. But according to Dr Hudenko's IMFAR follow-up study, "improving" autistics this way would result in their laughter being less preferable to nonautistics than is currently the case.

Reference:

Hudenko, W., Stone, W., & Bachorowski, J. (2009). Laughter Differs in Children with Autism: An Acoustic Analysis of Laughs Produced by Children With and Without the Disorder Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0752-1

How behavior analysis will help save the planet... How behavior analysis will help save the economy... How behavior analysis will help save lives... How behavior analysis will help us understand each other...

Looking around the 2009 ABAI convention program, you will in fact bump into the notion that ABA can, and should, save the world. For instance, from Tutorial #287:

This presentation will inspire a reconsideration of how ABA can save the world... the presenter will discuss the relevance of courage and compassion in realizing the potential of ABA to save the world...

Symposium #403 at this year's ABAI convention is chaired by Matthew Israel (Judge Rotenberg Center), and is titled:

The Use of Contingent Skin Shock in Treating Behaviors Other than Aggression and Self-Abuse

The three presenters in Symposium #403 are all from the Judge Rotenberg Center. Nathan Blenkush, BCBA-D (this is the highest status certification for behaviour analysts currently available), describes his presentation this way:

There are a number of topographies of problem behaviors that are intractable to standard behavioral and pharmaceutical interventions that cannot be classified as aggressive or self-abusive behaviors. In this presentation, we will describe the successful treatment of a variety of intractable behaviors using Contingent Skin Shock. First, we will review the literature associated with the use of CSS to treat non-aggressive and non-self injurious behaviors. Second, we will discuss how problem behaviors such as property destruction, major disruption (e.g. yelling, tantrums,), noncompliance or any other behavior in excess can severely harm students and completely interfere with treatment, education, and social development. Finally, we will present a series of case studies that will illustrate the use of CSS to treat these types of behaviors. Finally, we will discuss the treatment of these behaviors within the framework of the right to effective treatment.

Robert Von Heyn, BCBA-D, describes his presentation this way:

We describe the use of supplementary Contingent Skin Shock (CSS) to address intractable behaviors other than aggression and self-abuse. From 2003 to 2006, CSS was added to the programs of 72 students. However, in June of 2006, the New York State Department of Education put into effect regulations that limited the use of skin shock to aggressive and self-injurious behaviors. Subsequently, a federal judge temporarily blocked these regulations at the request of the parents and treatment resumed for most of these students. Here we first describe the initial effect of adding CSS to the students programs. Second, we describe the effect of the temporary suspension of the treatment for behaviors such as major disruption, property destruction, and noncompliance. Third, we describe how the regulations affected the treatment of problem behaviors such as aggression and self-abuse. Finally, we describe the effect of the reintroduction of CSS treatment, following intervention by a federal judge, for destructive, major disruptive, and noncompliant behaviors.

And Nick Lowther describes his presentation this way:

In June of 2006, the New York State Department of Education put into effect a set of regulations related to the use of aversive interventions such as Contingent Skin Shock (CSS). The regulations limited the use of CSS (and other procedures such as mechanical restraint) only to aggressive and self-injurious behaviors. The regulations also placed a number of other restrictions on the use of procedures such as CSS. However, after 9 weeks, in September of 2006, a federal judge temporarily blocked these regulations at the request of the parents. In this presentation, we discuss the impact these regulations had on the students at the Judge Rotenberg Center. In addition, the history of this lawsuit will be discussed. Finally, we will provide an update regarding the current status of the suit.

Symposium #403 comes with a written "Purpose," which adds little to the above except the false information that existing evidence supports the use of contingent electric shock for some behaviours. It is true that the current edition of the major ABA textbook (Cooper et al., 2007) promotes the use of electric shock with developmentally disabled people. But setting aside ethical issues which should not be set aside, Cooper et al. (2007) cite no good quality evidence arising from good experimental design, or anything even close, in support of this practice. In this major ABA textbook, very poor standards of science and ethics, which are known to harm human beings, coincide and are promoted as what autistics and other developmentally disabled people deserve.

In contrast there are scientists who, at least in some instances, have regarded autistics and other developmentally disabled people as deserving the benefit and protection of recognized standards of science and ethics. These scientists have unsurprisingly revealed the extremely well-established and well-recognized (outside of autism and ABA areas) importance of good experimental design (Tyrer et al., 2008; abstract is here, short description here).

I will not be attending the 2009 ABAI convention. The publicly available statements by the JRC presenters, two of whom are BCBAs at the highest level, are provided unedited here to speak for themselves. While the JRC's specific practices are the subject of controversy in some quarters, their stated standards are widely promoted as the only way to save autistics, and are not in any way unique to the JRC.

Thursday, May 14, 2009

You have seen the autism recovery story inthemedia. Bloggers havejumpedin too. I was at IMFAR 2009 in Chicago and saw the educational symposium presentation by Deborah Fein that was the stated cause of all the excitement.

But in her presentation, as in her abstract, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When speaking at IMFAR, she expressed doubt that this in fact could be done.

Dr Fein clearly added more information when speaking with the media. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media.

However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her oral presentation or in a series ofrelatedposters.

Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed.

In order to claim that conclusions can be drawn about the effectiveness of interventions in Dr Fein's study, as it has been presented, you have to be willing to reject and discard even the most basic standards of science. These are the basic standards that automatically protect and benefit nonautistics, the basic standards that were developed because without them people were harmed.

Two other aspects of what Dr Fein presented at IMFAR 2009 are noteworthy. One is that a major paper in the literature, published not long ago, reported a very high rate of what is now being called recovery from autism. To my knowledge, this paper did not make headlines.

Turner and Stone (2007) were looking at the stability of autism diagnosis at around age two years (mean age of 29 months). They carefully used various combinations within what is considered the gold-standard diagnosis: ADOS, ADI-R, and clinical judgment. And they found that early diagnosis, in their sample of 48 originally autistic children, was very unstable.

By age four (mean age of 53 months), only 53% of children originally given the specific diagnosis of autism retained this specific diagnosis, while only 68% were still on the autistic spectrum. The rest were not. That is a 32% rate of "recovery." Only 40% of children originally diagnosed with PDD-NOS at age two still had an autistic spectrum diagnosis by age four. That would be a 60% rate of "recovery."

The children whose age two diagnoses were unstable were largely still regarded as having difficulties, a finding that echoes Dr Fein's work, but they no longer could be diagnosed as autistic.

Turner and Stone (2007) attempted to associate instability of diagnosis (what is being called "recovery") with interventions received, but no association was found. They report:

All children in the sample received speech therapy, and the majority received additional interventions. There were no significant differences between the Stable and Change groups for the amount of speech therapy, t(46) = .30, p = .77, behavioral therapy, t(46) = .78, p = .44, occupational therapy, t(46) = 1.90, p = .06, special education, t(46) = 1.96, p = .06, or regular preschool, t(46) = .13, p = .90. Of the 6 children who received an average of 20 or more hours of intervention per week, 5 were in the Stable group and 1 was in the Change group.

In other words, few of the 48 originally autistic children in this study received what would be considered "intensive" intervention, and the majority of those who did kept their autism diagnosis.

In contrast, Turner and Stone (2007) found that diagnostic instability was related to earliness of diagnosis: the earlier the diagnosis, the more unstable it was.

The authors go on to discuss what may underlie the diagnostic instability they found while using the best available diagnostic standards. In fact there are many possible explanations. One point they do underline, however, is that given their findings,

...extreme caution must be taken when interpreting intervention findings that suggest ‘cures.’

And of course that would include intervention findings that suggest "recovery." This may be all the more so when diagnosis, and therefore intervention, is very early.

Also noteworthy is Dr Fein's use of the term "optimal outcome," a term she prefers to "recovery." Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.

According to Dr Fein, and those enthusiastically promoting her views, we know what an optimal human being is like, and this optimal human being is not autistic. An optimal outcome is not Stephen Wiltshire or Alex Bain or Daniel Tammet or Derek Paravicini or Hugo Lamoureux or Vernon Smith or Richard Bocherds or Danny Melvin or Tony DeBlois or janet norman-bain or Jessica Park or Temple Grandin or the large proportion of autistics found recently to have exceptional skills (Howlin et al., 2009) or me for that matter.

Indeed, Dr Fein's group has proposed loss of exceptional autistic skills as evidence for optimal outcomes. And given the great support Dr Fein's views have received, we should be in little doubt as to the goals of popularly demanded autism interventions, and the consequences for those of us who for whatever reason remain unrecovered. The decision as to which kind of human being is optimal and which kind is not has been made.

This practice is problematic in itself, but what is worse is that no questions are allowed when sponsors speak. Unlike every other speaker who presents at IMFAR, sponsors are considered to be above any kind of questioning or criticism.

This should not happen at a research conference. Nobody should be able to buy time to say whatever they wish, then refuse to take questions.

My suggestion is that if sponsors are to be given such a prominent place in the IMFAR schedule, they should be required to answer questions about the information and positions they put forward.

You can find the IMFAR 2009 program and abstracts, in different formats, via this page. Archives of abstracts from previous years can be found here.

This year I was involved in two abstracts. You can find them here and here. The first is below; the information in this abstract was updated, and therefore was slightly different, in the IMFAR poster we presented.

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Where Autistics Excel: Compiling An Inventory of Autistic Cognitive Strengths

Background: Until recently, there has been little interest in autistic cognitive strengths. Instead, autistic strengths revealed through comparisons between the performance of autistic and nonautistic individuals on various tasks have been largely reported or interpreted as evidence for autistic cognitive deficits (Baron-Cohen, 2005; Gernsbacher et al., 2006; Mottron et al., 2008). Also, there is currently no compilation of empirically documented autistic cognitive strengths as reported in the existing literature. Accordingly, little is known about the full range and quantity of autistic cognitive strengths or the variety and number of autistic individuals in which these strengths have been found.

Objectives: Our aim was to further understanding of cognitive strengths in the autistic population by identifying, quantifying and characterizing existing studies reporting these strengths.

Methods: We located and characterized papers published in peer-reviewed journals which reported autistic cognitive strengths. In order to be included, studies had to compare the performance of autistics to the performance of nonautistics on a task, and autistics had to be reported to perform better than their controls on the task. Studies specific to autistic savants and hyperlexics were excluded, as were probable but unclear reports of autistic strengths, and accidental findings arising from matching strategies. Autistic cognitive strengths originally reported and/or interpreted as deficits were included.

Results: In total, 52 distinct types of autistic cognitive strengths were found, reported in 71 papers (12 reporting two or more strength types) spanning from the 1970s to the present. Only 13 papers published prior to 2000 reported strengths, but at least five papers reporting strengths have been published every year starting in 2000, with the highest number per year in 2008 (N=13). Twelve of the 52 strength types were reported in at least two, and up to 10, papers, with the most replicated finding being superior performance in embedded figures tasks. While most strengths (N=36) were found via tasks using nonsocial information, several strengths involving social information (N=8) and language (N=7) were reported. Sample size for autistic groups ranged from 3 to 40, with a mean of 16, while mean age of autistic participants within samples ranged from 2 to 39 years. Total number of autistics, encompassing 81 different samples, was 1351, of whom 885 had the specific diagnosis of autism, while 130 were diagnosed with Asperger syndrome, and 336 were in the general “ASD” category. Of the 71 papers, 25 included autistic individuals judged to be intellectually disabled according to commonly used instruments, and 29 reported or interpreted one or more findings of autistic cognitive strengths as one or more deficits.

Conclusions: Numerous distinct autistic cognitive strengths, some of them highly replicated, in a wide range of areas, and displayed by a large number and great variety of autistic individuals, have been reported in the literature. Failing to acknowledge the importance of autistic cognitive strengths may impede efforts to understand autistic differences and assist autistic individuals. We recommend more consistent and transparent reporting and interpretation of autistic cognitive strengths and more attention to their importance.

Francesca Happé and Uta Frith, who organized the discussion meeting, write in the special issue's editorial that although "the association of autism with special talent, sometimes at the highest level, cannot be denied" it remains true that "special talents are still less researched and less well understood than other features of autism."

The long-standing lack of interest in what autistics do well is understated. For example, the commonly reported estimate that 10% of autistics have savant abilities dates back to a book chapter, involving an informal parent survey, published more than 30 years ago. If anything, the "Autism and Talent" special issue highlights the current, ongoing state of ignorance about the strong abilities that have been noted in autistics from the outset (Kanner, 1943; Asperger, 1944/1991; Scheerer et al., 1945).

In their special issue paper, Pat Howlin and her colleagues use very conservative methods to find exceptional skills in about one-third of a group of autistics originally diagnosed between 1950 and 1985. While noting this is "likely to be an underestimate," the authors can only ask, about the "particularly high" "rate of such unusual talents or skills" in autism,

"Why?"

Sixty-some years after unusual autistic abilities were first highlighted in the literature, their extent, nature, and importance remain strikingly neglected as subjects of research. This neglect and consequent ignorance is evident in the special issue. Throughout questions are raised that have long been deemed unimportant or irrelevant and so have largely gone unasked never mind unanswered.

In her paper, Pamela Heaton illuminates the price autistics pay for this long history of willful neglect and ignorance. She points to fascinating new evidence about autistics' advantage in perceiving musical timbre, adding to a wide body of work showing enhanced auditory pitch processing in autism. She shows that autistics "who do not meet criteria for savant skills... nevertheless possess considerable, but often unexploited, musical potential." And she concludes that autistics are being denied opportunities to develop their strong interests and abilities.

Our paper in the special issue (Mottron et al., 2009) proposes ways in which autistics' measurably atypical cognitive processes may--given the opportunity--lead to the development of savant abilities, which we see as autistic expertise. Again we have to note the fall-out from researchers' long-standing indifference to how autistics learn well:

However, it must also be acknowledged that the information autistics require in order to choose and generalize any given interest is likely to be atypical in many respects (in that this may not be the information that non-autistics would require), and may not be freely or at all available. In addition, the atypical ways in which autistics and savants learn well have attracted little interest and are as yet poorly studied and understood, such that we remain ignorant as to the best ways in which to teach these individuals (Dawson et al. 2008). Therefore, a failure to provide autistics or savants with the kinds of information and opportunities from which they can learn well must also be considered as explaining apparent limitations in the interests and abilities of savant and non-savant autistics

This account is in keeping with the failure of researchers to find consistent predictors of outcome among the characteristics of autistic individuals on which researchers have concentrated their attention (Howlin, 2005).

Kate Plaisted Grant and her colleague Greg Davis highlight in their paper, as we do in ours, how profoundly atypical autistic minds are. They conclude there is much to gain, for autistics and nonautistics, in acknowledging, understanding and encouraging autistics' strong abilities:

Research such as that described here makes this important point: savant abilities are relatively rare, but the skills observed in individuals with ASCs [autistic spectrum conditions] in many studies are common among the population with ASCs. These skills need as much training and encouragement as is given to any individual with talent in detailed processing, mathematics, engineering, design and so on. With such dedicated training, society, business and industry will reap the great benefits of the unusual minds of individuals with ASCs.

Monday, April 27, 2009

I've read your article about the so-called "autism culture movement," something I am not involved in. In this article my actions are falsely characterized then commented on. At no point was I contacted or interviewed.

Apart from placing me in a movement I don't belong to, and falsely characterizing me as a "crusader," you misrepresent both the nature of Auton and my role in it. In Auton at the Supreme Court of Canada, I opposed both sides, and both sides opposed my intervention.

My position in Auton was about autistic people in Canada who, like me, have not received ABA-based interventions starting very early in life (for many reasons, including that we are too old). This would be most autistic people in Canada. Both sides in Auton, as well as the lower court decisions, dehumanized and wrote off this majority of autistics as doomed, as undeserving of consideration as human beings with human rights, and as belonging not in families or society but in institutions.

My stated role in Auton at the SCC was as one autistic person. Through the lower courts and up to the Supreme Court of Canada, both sides in Auton, as well as the lower court judges, agreed that not one autistic person should have a say in the proceedings--proceedings which engaged Canada's highest law, our Charter of Rights and Freedoms.

Starting before the Auton SCC hearing in 2004, I made my position in Auton fully public, posting online all relevant documents. My intervention was based on the lower court decisions, the 5,000-page evidentiary record, and the applications, responses, replies, and/or written and oral arguments of the parties and other interveners. That is, I was responding to the case as it existed as a Charter case (engaging Canada's highest law, our Charter of Rights and Freedoms), not to some generic demand for ABA services. As with interventions by others in many other cases, the purpose of my intervention was to provide the Court with information it did not already have.

The SCC decision was not based on my intervention but on the failure of the Auton parents to make their case. The premise of the Auton parents was that all "medically necessary" services in Canada are publicly funded for everyone, but this premise is false. Because of this and other major errors on their part, the Auton parents lost. My intervention is mentioned in the SCC decision (though not very accurately), so it was likely influential in some way, possibly in alerting the Court that the two sides in this case--which entirely agreed with each other in excluding, dehumanizing and writing off autistics--were not the whole story.

In your article it is falsely and uncritically assumed that US and Canadian laws and ABA-related legal issues are the same. This is not the case. The way laws have been used in ABA litigation differs by country and has changed across time, with numerous contradictory claims being made (one example here). In Canada, ABA litigation has engaged virtually all of Canada's major human rights laws. The legal status of autistics in Canada has been determined almost entirely through ABA litigation and autistics daily live the consequences.

While I have learned a lot since 2004, the basis of my position in Auton is still the position I take now. Here it is:

1. Autistics are human beings with human rights.

2. Autistics deserve to benefit from and be protected by recognized standards of science and ethics, including professional ethics. These are the standards that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

3. Services for autistics, whatever those services may be, should be asked for accurately (with respect to the existing scientific literature), ethically, and respectfully.

That's all. In Canada, those demanding ABA services have been unable or unwilling to do so accurately, ethically and respectfully. They could have chosen otherwise. For example, they could have chosen to take the position that autistics deserve recognized standards of science and ethics. If they had, Canada would be a much different--better and safer--place for autistics.

My experience in human rights cases arises not from anything remotely related to the "autism culture movement" or any "crusade" as you falsely claim, but from my error in disclosing my diagnosis to my employer. This not only destroyed my (long, exemplary--according to my employer) blue collar career, it put me in danger. It took almost ten years and a lot of legal work to mitigate some of the damage.

This was not "crusading," as you misrepresent it, much less anything related to any supposed "autism culture movement." The numerous actions taken by my employer in response to knowing I was autistic were so extreme (though they are typical of how autistics--the majority of us who have not undergone ABA programs starting early in life--are regarded and treated in Canada), I did not have much choice.

I've gone on to take the risk of testing my ideas about autism via peer-review, and to show what an uneducated autistic (who has the behaviours and lacks the basic skills routinely invoked to scare people about autism) can contribute to autism research, given the opportunity. My publication record is nothing special, but it is not too bad for someone who has never attended university as a student, who has truly spectacular day-to-day difficulties, and who has been written off numerous times.

I disagree with many of the statements made about ABA-based autism interventions in your article--on both supposed "sides." I have criticized as inadequate, inaccurate and harmful many of the popular criticisms of ABA-based autism interventions. I disagree with ASAN's overall position about ABA, which in many areas is poorly informed and ignores the major underlying issue of quality of intervention research. At the same time, ABA as an approach to autism has been defended by its promoters as though it were an ideology, as sacrosanct and above scrutiny and criticism. ABA is supposed to be a field of science. The poverty of how ABA-based interventions have been both criticized and defended demonstrates the poor standards of science and ethics that are routinely promoted as what autistics deserve.

If you asked, I would tell you that "cultural phenomenon" views of autism have been harmful to autistics, detracting from crucial issues of basic human rights and standards. You won't find "neurotypical" much less "curebie" in my writing, and I sometimes disagree with ASAN's public positions and recommendations (for example, with respect to ABA-based autism interventions and autism research priorities). I have never claimed to represent other autistics, unless individual autistics have specifically given me this privilege.

At the very basic level where I function, representation is beside the point. The issues that matter involve attempts, by those promoting ABA-based interventions and others similar, to remove the basic human rights of autistics (for example, those of us who have not undergone ABA programs starting early in life), and to deny us recognized standards of science and ethics. Anyone is free to deny their own basic human rights, and to deny themselves the basic standards that exist to protect and benefit everyone. But denying basic human rights and basic standards to others is another story.

I wrote virtually nothing about "neurodiversity" until those unfamiliar with my work persistently associated me with it. In response I defined neurodiversity as part of the general idea that disabled people should have human rights--mainstream and noncontroversial except when the disabled people are autistic. I suspect people on both supposed "sides" disagree with this definition, but I don't have a "side," much less a "crusade" and do not have what it takes to be part of any "movement" much less a cultural one.

The standards currently applied to autistics are such that you are free to misrepresent me, and major legal decisions and issues, and so on, all you want. There's nothing I can do except put accurate information on the record, again, even though it has been here all along, for anyone who takes autism seriously.

Saturday, April 25, 2009

A recently epublished paper reports autism epidemiology in Aruba (van Balkom et al., in press). The findings: autism prevalence of ~19/10,000 and autistic spectrum prevalence of ~53/10,000 (of which only ~2/10,000 Asperger individuals were identified). Because case finding methods were very conservative and limited, the authors state that:

These prevalence estimates should be considered minimum prevalence.

Even so, these figures are

similar to recent reports from the United Kingdom and the United States.

For example, the combined Chakrabarti and Fombonne (2001, 2005) studies reported autism prevalance of ~19/10,000 and autistic spectrum prevalence of ~61/10,000. Very similar figures from the UK were recently found by Williams et al. (2008). In fact the reported minimum autistic spectrum prevalence in Aruba is noticeably similar to reported autistic spectrum prevalence in the Faroe Islands (~56/10,000; Ellefsen et al., 2007).